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89 Comments

  1. 1

    Lisa Mims

    I’ll probably get blasted for this, but Red Bull is good for celiacs, if you’re not caffeine sensitive, and you don’t have high blood pressure. A lot of the problem with B-vitamins is that they don’t absorb well in the gut, because of the damage celiac causes. Sublingual B-vitamins can help a lot.

    If you don’t have sublingual B-vitamins handy, Red Bull has a ton of liquid B-vitamins. I had some of the symptoms of peripheral nerve damage, and I started drinking Red Bull once a day. Within a few months, the symptoms stopped.

    Sublingual b-vitamins (under the tongue or absorbable by the mucous membranes in your mouth) are the way to go.

    Reply
    1. 1.1

      Kathy

      So that’s whay I always felt good after a Red Bull? I love that stuff, but haven’t had it in a while because of all the bad press.

      Reply
    2. 1.2

      Merlow

      YES! I too have figured out the Red Bull connection and started the B supplements this year. Have noticed a big difference in energy!

      Reply
    3. 1.3

      Cathy

      Hi Lisa,

      I take a LIQUID vitamin B and it does wonders for me (I have celiac). I can’t imagine large amounts of caffeine are good for anyone but certainly understood when were all just so desperate to find something that works. Caffeine while great in some ways also impacts my super sensitive and damaged nervous system (due to celiac).
      I just want to put out there that there are other ways to get nutrients and wanted to let people know the liquid vitamin made a huge difference for me.

      Reply
      1. 1.3.1

        Lisa Mims

        I wouldn’t recommend Red Bull for anyone who is caffeine sensitive. Before 23andMe got sued for giving out health information, I got my genome sequenced. I have a Dutch fast-caffeine-metabolizer gene that is pretty common, apparently. I can drink a can of Red Bull and inadvertently fall asleep two hours later.

        Obviously, whether or not it would work for you, depends on whether or not you have an issue with caffeine. Anyone who does, should stay away.

        Reply
        1. 1.3.1.1

          Lisa Mims

          You guys like cites: half of all people metabolize caffeine rapidly. For us, it’s not a bad thing.

          http://www.precisionnutrition.com/all-about-coffee

          Reply
        2. 1.3.1.2

          Kathy

          My hubby has always been amazed tat I can drink a cup of coffee befor bedtime and have an easy night’s sleep. Caffeine has never bothered me.

          Reply
      2. 1.3.2

        dawn

        thanks. doing bilingual, but desperately waiting for celiac results, and will try liquid. been trying for accurate diagnosis for almost a year. breathing problems have totally disrupted my life, along with essential nutrient absorption, electrolytes, etc. thanku! buying liquid today.

        Reply
    4. 1.4

      Kara@kompromisedkitchen.com

      Five hour energy is also a real good B-12 boost. It can “flush” your face a bit from the rush of vitamins, but it’ll clear my brain for a couple days. It’s always trying to decide the lesser of evils for me when it comes to this “good for you, not good for you stuff”.

      Reply
      1. 1.4.1

        Lisa Mims

        Thanks! I’ll have to try that!

        Reply
    5. 1.5

      Sharon Laakko

      Do you have any metal in your body? like Essure birth control? Symptoms happen to those with essure too. Their vit b levels are low as inflammation affects absorbtion.

      Reply
    6. 1.6

      Charlotte

      For those struggling with B12 deficiency, I recently heard about a new oral prescription alternative to the injections. Has anyone heard of it, it’s called Eligen B12? I recently read that it works even if you don’t have intrinsic factor (so even if you don’t have normal gut absorption). I think it came out a month or two ago

      Reply
  2. 2

    Chantal

    My brain feels tired from time to time. Not being able to find a simple word, forgetting what I was doing. Brainfog without getting glutend.
    In my case I don’t think it’s my B12, because I recently got a bloodtest and all the results were fine.
    But it’s not fun to go through a period of time with a tired brain.

    Reply
    1. 2.1

      Danielle

      Hi there! Its possible that your b12 numbers are in the “normal” range, yet are still causing symptoms. Often the “normal” range that labs show are actually much too low. You should be at least 550pg/mL for B12. Any lower than that and you can have symptoms of B12 deficiency which of course can cause a host of issues! If you don’t already have those blood test numbers in your hand, I would highly encourage you to obtain those from your doctor. I hope that helps!

      Reply
      1. 2.1.1

        Bethany

        Thanks for giving that number! We’ve figured out that taking a B vitamin helps with my depression amd brain fog, I just looked at my bloodwork from last summer – my B12 was 566, barely over the number you gave. I wonder how much fluctuation there is?

        Reply
        1. 2.1.1.1

          IrishHeart

          But these measurements can vary from lab to lab.

          What does the range say on your specific lab report?

          Reply
        2. 2.1.1.2

          Danielle

          Im glad to help! Im not 100% sure how much that might fluctuate- It depends so much on the individual, your diet, and your ability to absorb that vitamin, etc. I would suggest having your blood work done again. Information is power! Having a full blood work panel done each year helps immensely in understanding our symptoms and monitoring things. B12 is incredibly important and can have such a serious effect on you, I wouldn’t mess around with it!

          Reply
        3. 2.1.1.3

          Bethany

          The Reference Range is 213-816. I wonder at the validity of the ranges given on tests, though, as I’ve been told that the reference range for vitamin D is sorely skewed because so many people are deficient in it.

          Reply
          1. 2.1.1.3.1

            Bethany

            I run across a lot of information similar to this when I’m researching random things:http://www.stopthethyroidmadness.com/lab-values/

            Reply
          2. 2.1.1.3.2

            IrishHeart

            That means your B-12 is perfectly normal, hon.

            She was talking about a different standard of measurement.

            Reply
        4. 2.1.1.4

          Sarah

          I was at 433pg/mL when I got diagnosed via antibodies/biopsy… No doctor I was seeing would have flagged that. When I had been healthy but cold all of the time, they checked it once and I was in the 800’s. I don’t know how wildly those numbers can vary day to day though.

          Reply
          1. 2.1.1.4.1

            IrishHeart

            You’re right. The level of B-12 wouldn’t vary like that day-to-day.
            The level of B-12 takes time to increase or decrease.
            What I was saying to Bethany was that different labs use different reference ranges, that’s all. According to her lab report, she is right in the middle of the ref range,

            Also, what I was saying about having the folate levels checked is because it mimics a B-12 deficiency and can skew the B-12 results as well. Mine was very low after DX and I still felt fatigued and brain-fogged.I asked for the folate test to be run and that’s what it was. Low folate is also common in malabsorption and celiac.

            “While serum vitamin B12 concentrations are generally accurate,many conditions can complicate the interpretation of vitamin B12 laboratory values. Falsely low values have been associated with multiple myeloma, oral contraceptives, folate deficiency, and pregnancy. Additionally, a low serum B12 level does not automatically mean a deficiency. From 20% – 40% of elderly people with low serum B12 levels have normal metabolite (homocysteine [Hcy] and methylmalonic acid [MMA]) levels and should not be considered deficient.
            Opinions differ as to the optimal laboratory cutpoint for the serum vitamin B12 test, due in part to the insidious onset and slow progression of the disorder and limitations of current assays. Research studies and clinical laboratories have tended to dichotomize low. Stabler and Allen note the following range of serum cobalamin levels among patients with a clinically confirmed B12 deficiency (defined as those who “have objective clinical responses to appropriate therapy”): less than 100 pg/mL, approximately 50%; 100 to 200 pg/mL, approximately 40%; 200 to 350 pg/mL, approximately 10%; and more than 350 pg/mL, approximately 0.1% to 1%.
            Adequate follow up for suspect normal or low normal results is needed through either additional confirmatory testing or a prolonged therapeutic trial followed by metabolic and clinical reassessment.

            also:
            The CBC, smear, and the serum cobalamin (B12) test should be included in the initial laboratory assessment of vitamin B12 deficiency.”

            So, just having the B-12 level checked might not give someone the full picture of what may be causing the fatigue and brain sluggishness..
            Hope this helps clarify what I was saying. :)

            “If the root cause of vitamin B12 deficiency is not obvious, you should consider ordering additional tests to determine it. Antibodies to intrinsic factor (IF) and gastrin or pentagastrin I levels are often used to diagnose pernicious anemia. ”

            http://www.cdc.gov/ncbddd/b12/detection.html

            Reply
      2. 2.1.2

        Greg

        I absolutely agree with Danielle. I had my B12 tested and got a B12 shot the same day. My test results were not only normal, but close to the high end. The shot temporarily alleviated the aching pain in my body. I still cannot figure how all my test results were normal while my symptoms were so bad.

        Reply
    2. 2.2

      Lori

      You can have “normal” Vitamin B12 levels in your blood, but if your body is not utilizing it in the manner it should, it will not do what it needs to do. A Methyl B12 sub-lingual is utilized by the body quickly and efficiently. There is a gene defect (go to MTHFR.net) that is an indicator of the body’s inability to utilize B-12 and folic acid. That second one needs to be a folate vs folic acid in order to do the work it needs to do. Regular vitamins have B-12, in the form of cyanocobalamin, and folic acid in them. Both of these need to be converted in order to do their job in the body. If you have a genetic defect, you may never get the full amount you need to do the job that is needed. Watch on youtube Dr. Neil Rawlins. There is a 4 part series (total of 1 hour time) that explains what happens when these vitamins are not doing their job.

      If you are celiac, have been gluten free for a long time, are taking your “vitamins” and still feel foggy, consider this possibility.

      Reply
  3. 3

    Jenn

    All of my symptoms are Neuro . I feel like I have just read a letter outlining my own journey. I receive B12 injections, and yes, doesn’t it feel great to be alive again? My family is aware something is up when my words slur, I’m drowsy and I can’t name the object right in front of me. I truly thought I was going crazy for a very long time of my life. Keep up your vitamin regime it will continue to do wonders for you :)

    Reply
    1. 3.1

      Charlotte

      Not sure if this helps but I recently heard about a new oral prescription alternative to the injections called Eligen B12. Might be something to check out

      Reply
  4. 4

    Carissa Bula

    I feel like I just read a letter about me. Thanks so much for sharing. I am going to try and get a B12 shot and see if that helps!

    Reply
    1. 4.1

      Charlotte

      Hey Carissa, I just wrote this above to Jenn as well but I heard about an oral prescription that is new to treat B12 deficiency as an alternative to the injections. It’s called Eligen B12 if you want to look into it!

      Reply
  5. 5

    Bethani

    When I eat the wrong food, it doesn’t even have to be accidentally eating something with gluten in it, it could be something with dairy, I forget a lot. I forget what I was about to say and have the hardest time remembering, I mumble, etc. I thought it was just brain fog but it seems it could be more than just that. In a sense, I do feel what you’re going through and you aren’t alone in it.

    Reply
  6. 6

    dline

    Hi There: Unfortunately, I know what you’re talking about. My Celia went undiagnosed for many years. When I finally received the diagnosis, at 34 years old, the damage had already been done.

    Beside the brain fog, neuropathy, memory issues and inability to absorb Vitamin D (no matter what amount is prescribed), I have also developed Epilepsy.

    My seizures started several years ago and have not been able to get under control even with a gluten-free diet and anti-convulsive medication. The kind of seizures I have are complex-partial. They aren’t the traditional Grand Mal kind you immediately think of. I lose consciousness for 2-5 minutes, but am “awake”, just staring off into space. These too went undiagnosed for years (I just thought I was losing my mind :).

    Studies have found a significant connection between Epilepsy, neurological issues, and Celiac. Please know you aren’t alone. I’ve put my cell phone in the refrigerator, had moments when I couldn’t remember my children’s names, and have also had the linguistic challenges you mentioned.

    My advice is to see a neurologist. sometimes they can help with ideas on how to deal with the cognitive issues you’re going through. Good luck!

    Reply
    1. 6.1

      Lou

      for me it was wallet and keys in the fridge….. many many times……

      Reply
      1. 6.1.1

        Gloria @ glutenfreepoodlehome

        I will always remember the week before my celiac diagnosis my husband found me crying in the bathroom because I couldn’t remember which color was my toothbrush. Just a few years later I was working on a getting a chemistry degree.

        Reply
      2. 6.1.2

        Maggie

        I am newly diagnosed from, long story short, having genetic testing. I first noticed a blistery rash on my hands 25 years ago (during a very stressful time).

        A couple of years before that I found my lost sewing scissors in the freezer. I have never found my engagement/wedding ring after taking it off to bake bread when I tried to put in on and remember thinking ” I need some cream to get this back on”. Recently, (before going totally gluten-free, but having connected the hand rash to eating wheat) I lost a very sentimental pair of earrings! I went through the garbage and vacuum bags with rubber gloves and still can’t find them (when I absolutely know they HAVE to be in this house).

        Thank you for sharing this post so that I now know the connection!

        Reply
  7. 7

    Joanna

    Hi Sarah!

    Lisa makes a good point about the sublinguals, definitely helpful. Now you are only 2-3 years into the healing process here, don’t forget that it took a long time for your body to get this way….. it will take time for it to heal.

    The brain fog thing – comes with the territory unfortunately. Funnily enough, this has probably been happening to you all your life and it is just recently that you have been able to recognize it – that is a step forward in the process.

    Are there doctors focusing on this – yes there are. Finding one is the trick, not easy. Are you alone out there, well yes and no. Your journey is an individual one, as all of ours are, but reading a straight up blog like this one helps you feel less alone.

    Being the bundle of weepiness on the floor and doing a 180 pretty well right after the B12 shot well that says to me that the only mental health issues you probably have are the natural result of being so sick for so long. Anger, frustration, other negative things like that that you need to work out. Nope, you are not crazy although you will run across all sorts of people who think you are on the road to health.

    Keeping yourself functional and in balance and having some quality of life – the best that I can tell you is try to eat a balanced diet, as organic as possible, let the healing happen and get checked for various blood levels frequently. Might be the thing that gives you the hint as to how to tweak your diet to maintain your level of health.

    Graduate career over – don’t think so. You might have to do it differently, but you can do it. Do not give up on your dreams. Period.

    Oh, and the supplements by mouth thing – well that stuff has never worked for me personally. I think you are better off trying to do it using real food, in a balanced diet. Work? Yup. Worth it? Big time :)

    Hope this has helped you gain some perspective, and maybe some ideas on a direction to take.

    You are fortunate to have found out at 32, as opposed to in your 50’s. Remember that when you get impatient with the healing process, might remind you to be patient with yourself :)

    Joanna

    Reply
    1. 7.1

      Steph W

      Joanna – what a lovely response. It happened to also fit with many themes in my life as well. Thank you for being such a kind and wise celiac! =)

      Reply
  8. 8

    Rebeca

    Hiya

    Been celiac forever according to my endoscopy results but only diagnosed 5 years ago. Im 38 years now. Haven’t had any problems apart from having bad stomach aches when i do eat gluten(i know…totally irresponsible ) However have been having acai from the pulp(acai smoothie with granola/oats/honey and banana) every single morning for 2 years now and feel great !!! All my blood results are really good …….You should try that!! they sell at sublime food.com

    all the best

    Rebeca

    Reply
  9. 9

    thetxlady

    Red bull? Seriously!! Yep caffine & sugar is exactly what people with chronic malabsorption & diahrrea need to use frequently. As for “vitamins” they are in the citric acid used to bind that trash together if anywhere. My naturopath with a real degree said stuff like that will kill us faster than anything else & NEVER EVER take it.
    As for sarah, stupid advice abounds when it comes to some of the lesser additional auto immune issues that go with celiac. I have the same mineral issues & daily suppliments along with electrolyte hydration powder in the 2 GALLONS of water I consume daily seems to help.
    As for the neuro I actually did have more than one doc say just from talking to me that early onset altzheimers was a real possibility & after a brain scan was diagnosed with TBI. Go figure, one too many concussions along with mineral deficiencies & celiac is bad for you. In the solutions department I’m kind of lacking as well. As long as I stay hydrated (migraines are first symptom when I don’t), take my suppliments & avoid gluten I’m fine. When I don’t its a combo of piercing migraines, violent mood swings, gluten rage, disorganized thought for up to a month after & dealing with the cruelty that follows. Since this is one of the lesser investigated side effects it may take more time to find the right doctor. I would try the celiac research center out on the east coast & talk to them about finding a celiac friendly neurologist. With the mood swings & headaches being some of the most common symptoms the connection is there…now its a matter of finding someone to figure out why.

    Reply
  10. 10

    Kathy

    My brain looks like the one in the scan, only with more white spots. Can’t remember what they called them. Foci, or something. That was the reason I kept getting dx’d with MS, even thought the spots were in the wrong spot (MS foci tend to cluster in a particular area of the brain apparently). I suffered from gluten ataxia to the point where there were days I could not walk. That’s a charming symptom that come back when I get accidentally glutened, or I eat too many inflammatory foods. I have horrible word recognition, and I can’t talk at length, because I get physically exhausted and my brain goes to mush.
    I am on supplements up the wazoo. I found out 2 years ago I was anemic prior to my knee surgery. Last summer I found out I was B12 deficient and dangerously D deficient. Addressing those problems has made a huge difference. I had not known that D deficiency can lead to high blood pressure. I have actually been able to get off my meds for that, and feel great in that regard.
    So, Sarah, you are not alone. Many people will dismiss you for those symptoms because, to them CD and gluten intolerance is all about spending a few hours on the toilet. I actually had a dietitian argue with me about that – and her specialty was diet and allergies. Sheesh! If it were only that. Anyway, this is one place you will find us all. We are with you, and we understand you – no matter what the symptoms.
    Welcome!

    Reply
  11. 11

    Doug

    I’ve got neuro problems as well. Before diagnosis, my legs had a myoclonic movement (“leg jumping”). Because it was the least of my problems, I didn’t mention it to the doctors. Howveer, several months after going GF, the movements stopped, and alls was well.

    Fast forward two years. I was back on the road for business, getting glutened every two to three weeks. The myocolic movement returned almost immediately. After three months, I wisely stopped traveling, but the movements continued. I went to see my doctor, who sent me to a rock-star celiac doc.

    That doctor told me that the problem was that gluten was stripping the myelin off of some nerves. Myelin is analogous in function to insulation on an electric wire. Where the nerves are close and myelin has been stripped, a short circuit appears, and the signals jump from one nerve to another. That causes the myoclonus.

    He also said that I still had the problem because of hidden gluten in my diet. Once I found the hidden gluten and removed, it, the myelin would slowly build back up, and in six to eight months the movement should stop.

    I found the hidden gluten — Hershey’s miniatures I bought when famished in New York. The movements stopped exactly eight months later.

    Reply
    1. 11.1

      Kathy

      Interesting about the Hershey’s…… I had an episode at work several years back – I was unaware of something going on, but had coworkers follwing very close and staring at me. Finally asked them what was wrong and they said I was weaving and not making a lot of sense. The culprit? Reeses mini Bunnies I had gotten half price after Easter. I had 3 of them. The following day I caled the company – no gluten in the recipe, but they used flour to coat the molds.

      Reply
  12. 12

    Sue in Alberta

    Oh, Sarah, no you don’t sound crazy. You’re desperate to get healthy. I don’t have much to add but to repeat what’s been said, the quality and the form of the vitamins you take really matter. The basic rule of thumb for absorption, starting at the best is liquid, sublingual, gelatine capsule then tablet.
    Coming from an “allergic reaction waiting to happen” person, dealing with seasonal allergies alone results in cognitive impairment.
    Be gentle with yourself.

    Reply
  13. 13

    BessieyKay

    Yes! After ten years I have figured out some of the couple warning signs that I have been glutened is the whole room does a quick spin and soon after I’ll be starting to talk and its like my tongue is just sitting in my mouth sleeping making my words slur! My tongue could also fall asleep mid sentence or start saying the words from the middle of my sentence making everything very messy. I have to stop and pause to reform my sentence, sometimes more than once. Very embarrassing. This only last about 24 hours on and off. I will also have trouble remembering the end of a story and my brain will be so suffocated that my sinuses feel all stuffed up but nothing ever comes out if I blow my nose. I feel like I want to blow my brain out my nose! My sinuses feel stuffed for a day or two. On top of it all I get stomach issues for at least 3 weeks and just a mild blah brain fog for a month.
    I too thought I was nuts! Especially slurring my words at an interview… pretty sure they didn’t think I was sober.
    I realize that this is only relating to part of the letter I can relate to but I have never known how to express this and been afraid to have more eyes roll at me when saying I think it’s a gluten related issue. Thank you for making me feel less nuts!

    Reply
  14. 14

    Christal McMillion

    I have a lot of these same issues. Do some research on mthfr.its fairly common. But rarely heard of. Also try a daily vitamin of natural b vitamins that are already broken down. Some people, especially those of us with compromised systems, cannot process synthetic bvitamins. Emerald labs makes a great one that you can buy at sprouts and whole foods. It has pre and probiotics in it too. Coenzymated b healthy is what its called. Its helped me tremendously with the brain fog, exhaustion and word swapping.

    Reply
  15. 15

    IrishHeart

    Sarah,
    i can relate to this so well. I call it “gluten head”. Much has been written about celiac and neurological complications and if we could get the neurologists on board, we’d have more doctors diagnosing celiac properly before all hell breaks loose in someone’s body. I saw several of them and not one of them could tell me what the heck was going on.

    I can fully relate to how alarming it was to lose cognitive function, to grasp for words, forget why I walked into a room, be unable to add a column of numbers, or even drive my car because my reflexes were impaired. I forgot how to cook. Really, I could only manage one pot on the stove at a time because multi-tasking was impossible and reduced me to tears. I walked sideways sometimes, had vertigo, ringing in the ears, painful burning neuropathy and lost sensation in my back and legs. I burned from head to toe. It was insane. The worst part was being unable to read and comprehend.

    It took many, many months after Dx for all of that to resolve. I took B-12 for a long time before and after diagnosis, but a folate deficiency can also be a culprit. Before anyone starts supplementing in large doses, get a baseline reading from blood work, because once your gut starts healing, you should be able to absorb vitamins just fine. You can raise your levels of B6 and B-12 too high and suffer neuropathy and it is not pleasant.

    I suggest you see a doctor and have your vitamin levels checked plus a few more: Folate, D, K, B-12, B-6, and ask for Serum iron, serum ferritin and iron %SAT, serum zinc, serum magnesium, too.
    These are the ones my celiac/GI doc orders for me.

    Best wishes. Dr. Hadjivassiliou is the man who seems most interested in the neuro effects of gluten. His work is ongoing. A few articles of interest;

    http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html

    http://www.ncbi.nlm.nih.gov/pubmed/20170845

    http://www.ncbi.nlm.nih.gov/pubmed/12151653

    https://sites.google.com/site/jccglutenfree/theneurologicalmanifestationsofgluten

    Reply
  16. 16

    Comrade Svilova

    I went through serious word-substitution issues last year while I thought I was eating gf but wasn’t aware of cross-contamination and was working at a bakery. It really scared me, because I was about to start graduate school. As I was starting school, I also started eating the way I should and I’ve felt like my cognitive functioning has leapt forward. It’s really wonderful. But when I get glutened, I can’t read for my classes, I stumble through comments in class, and it’s terrible. Most of my doctors don’t believe I have any issues with gluten, let alone neurological issues, because they claim that there is no connection between neurological problems and celiac/NCGI (or arthritic symptoms and celiac/NCGI — they believe GI symptoms are the only signs of celiac, and mine are relatively mild)(and they don’t believe in NCGI at all). I wish all of this was better known in the medical community.

    Reply
  17. 17

    Barbara

    You are definitely not alone and you will overcome this. Look into the University of Chicago Center for Celiac Disease. They are at the forefront of research, have a wealth of information and doctors who actually “get it”. http://www.cureceliacdisease.org

    Reply
  18. 18

    Toi

    Oh my!!! Can’t believe I just a bio of myself from Sarah and so many others. The fear of Alzheimer’s and dementia has really started to grip me…..although I have been GF for 10 years. Just in the last 2 years I found a doc who realized I was b12 and vit d deficient. But I am still having the “dyslexic” dementia symptoms and I really can’t figure out why. All the responses have helped a lot…just knowing I’m not alone. Thanks Sarah for having the guts to post the letter.

    Reply
  19. 19

    Kara@kompromisedkitchen.com

    Sarah, absorption is still the strongest enemy I fight concerning my Celiac. I NEVER get glutened by choice, so… If I can encourage you at all it would be to ay this: While this new “house guest” will never move on and leave you alone, I find it oddly comforting to al LEAST know what the problems relate to. The years I spent not knowing felt like psychosis! While I may not have “cures” and even my doctors still look at me like, “come on already” “another thing”, I at least know what that root is, so I begin to dig around that troublesome Celiac to find answers, And I have year to find mischief being caused by any other culprit.

    P.S. Gluten Dude, I love that you have a bunch of foggy headed Celiacs needing to do MATH to post a comment. fun :)

    Reply
  20. 20

    Jennifer

    Hi Sarah-
    I, too, suffer predominantly from neurological issues as a result of my gluten problems. The digestive issues, while definitely miserable, were secondary for me. Like you, intentionally ingesting gluten is never an issue for me. People don’t always believe me when I say this, but gluten makes me feel so bad that cheating is not even a temptation for me. However, accidental ingestion/cross contamination is always going to be an issue that is out there for everyone affected. That being said, I am very lucky that if I eat pure, non processed foods, I tend to feel pretty good. I don’t recall you mentioning specifics about your diet in your letter. I can tell you that, no matter what brand, certification, etc, etc, that it has, if a food includes ingredients that I can’t pronounce, I don’t eat it!! I try to eat as much fresh food (lean protein, fresh fruits and veggies) as possible. If I do eat something that is gluten free but may be somewhat questionable, the first thing that happens to me is tingling and burning in my nerves, and brain fog!!! And yes, the forgetfulness is unreal.
    I haven’t read through all the comments on this post, so if I am repeating other people’s information I apologize, but something else I will mention is that for me, I can tell that hormonal fluctuations can definitely aggravate all of my symptoms. I am still working on figuring out the relationship between the two, but I can tell you there is a definite relationship there.
    Last but not least, if you haven’t yet read Jennifer Esposito’s book, you need to!! I think everyone should! I think she’s experienced every gluten issue a person can, so it is somewhat comforting to know you are not alone. She also generously shares the wealth of knowledge she has gained. It is a great resource!

    Reply
  21. 21

    Jennifer

    Thinking that I was going crazy (seriously…not just figuratively) is what finally prompted me to go gluten free. I don’t always want to sound like I am knocking doctors (there are some great ones out there) but after several years of different doctors and repeatedly going back, knowing that something was wrong but no answers made me take matters into my own hands. The last time I saw one I even said, “I think I am losing my mind!” She gave me an antianxiety medication and told me to avoid stress. :(

    My (neurological) symptoms were milder than yours: dizziness, fog, headaches, forgetfulness, constant anxiety, full blown panic attacks, and a sudden NEW fear (never a problem previously) of driving over bridges & some strips of highway. I thought I was going to end up being homebound (in my late 30’s). I had physical symptoms as well, but these other symptoms were terrifying. I have never seen a brain scan like that of the celiac above and I will do more reading on that.

    I, too, take a sublingual B and it seems to help. I also am a firm believer in probiotics for helping to heal the gut. I take one daily. I also make a morning shake using spinach, blueberries, flax meal, plain yogurt, coconut oil, almond milk, and other berries/pineapple/or peanut butter. It is rich in vitamins/healthy oils via whole foods. But I am far from being a nutritionist.

    I wish you the best of luck on your road to healing your body and your mind!

    Reply
    1. 21.1

      Ginny Vanwensem

      Thanks so much for mentioning that new found fear of driving over bridges, I have developed that fear, and thought I was loosing my mind.

      Reply
      1. 21.1.1

        Kathryn

        I suddenly developed a fear of bridges when I was a young adult too! When I was diagnosed 25 years later, that fear and all my anxiety disappeared. It blows my mind how just about everything leads back to gluten!! It’s crazy….

        And lol, I’ve been stymied by the math questions too! Struggled to write a semi-coherent reply, then gave up when I ran out of fingers. Now I make sure I know the answer before I type my comment :)

        Reply
        1. 21.1.1.1

          Jennifer

          It’s crazy right!? Stop eating gluten, and we can travel again. Although it wasn’t an immediate fix. It took months for me to get past that panic reaction and the better part of a year for the anxiousness to disappear. I still think of it every time I head to the mall (have to cross a river) but I haven’t gotten light-headed now that I eat gluten free (I bet the other drivers are happy to hear that…lol). The sad thing was I was so ashamed of this “weakness” that I didn’t tell anyone, not even my husband. I didn’t want anyone to know I was becoming “crazy.”

          Reply
  22. 22

    Gloria @ glutenfreepoodlehome

    I had to stay on B12 shots for about a year before I was able to wean to siblingual B12. I actually got my vitamins up an old fashioned way (this was 18 years ago and I was doing this on my own) by drinking Geratol. Does anyone remember the old commercials? It really did help me and I agree with everyone who is saying that liquid vitamins work better.

    On thing I would like to say as a person who works in the healthcare field: Dr’s have to justify everything they do to the insurance companies. They cannot just order random things with a diagnosis or reason because the patient will have to foot the bill. I work as a dietitian and the Dr’s can refer someone to me (licensed dietitian/nutritionis) with a diagnosis of celiac disease or food allergy, but not because they just stopped gluten. As a fellow celiac I know that it is hard to get a diagnosis and to find a Dr to help you, but stopping gluten on your own often does lead to poor follow up care.
    No, Dr’s are not all focusing on fixing the nutritional stuff but at the hospital level, the Dr’s send patients to a dietitian for that. Any labs I recommend the Dr’s order and we work togther to heal the patient. Again, with no diagnosis Dr’s will not usually do that.

    Reply
    1. 22.1

      Jennifer

      I completely agree that it is better to have an official diagnosis, and if I could go back a couple of years ago, I would seek out a doctor who would listen. But I, like many others, felt DESPERATE and at the end of their ropes when it comes to finding what was going on with our bodies/minds. I did not feel like anyone else would listen. I did not want to sound like a hypochondriac anymore! I had already had enough of that. Add to that, that gluten can affect your thinking and/or anxiety level. Soooo, even though I really, really wish I had an official diagnosis so that I could get individualized and proper follow-up care, I will never….ever….eat gluten again. Even for a test that would confirm it officially. My symptoms are just too scary for me. As a side note, my current doctor supports me and is aware of my past symptoms so I feel like I am under some form of professional supervision.

      I wish I had thought of/ or been referred to a dietician, like yourself, so that maybe I would have had an opportunity to look at my diet as a source my problems. I think all physicians should have a dietician on staff and utilized with more patients as part of a whole body healing approach.

      Reply
      1. 22.1.1

        Gloria @ glutenfreepoodlehome

        I completely understand what you are saying Jennifer. You do what you have to do. But it is important for people such as yourself to say what you just said. ” I wish I had gotten a diagnosis.” Maybe it will steer someone away from just trying the diet themselves. It is 6 of one and half dozen of another, you are still getting off gluten. But once you go GF and feel well, it is hell if not impossible to try to get back on gluten and be tested. Unfortunately many people on Facebook and elsewhere just urge people to go GF.

        Reply
      2. 22.1.2

        Maggie

        I wasn’t willing to do a gluten-challenge after being off wheat for almost two years. I had been told I had colitis a couple of years prior to that. So I chose genetic testing and found that I got a gluten-sensitivity gene from one parent and gluten- sensitivity AND celiac from the other parent.

        Interestingly, for years I had been adding my grandmother’s death from non-alcoholic cirrhosis of the liver to my medical history and none of the doctors linked it to possible celiac disease. Now looking at that along with parental type 2 diabetes and peripheral neuropathy, sibling with type 1 diabetes and non-diabetic neuropathy and a child of mine with migraines …. It all adds up. Because of my getting the genes from both of my parents, all of my children are guaranteed to have at least one (gluten sensitivity or gluten sensitivity/celiac).

        Reply
        1. 22.1.2.1

          IrishHeart

          But, there are no ” gluten sensitivity genes.”??
          There are no valid tests for NCGS at this time at all.

          http://www.uchospitals.edu/pdf/uch_007936.pdf

          I am not sure where you got this “GS gene test” done, but I assure you, this is not a diagnostic tool. If you mean Kenneth Fine’s lab, I am sorry, but his research hasn’t been replicated by others studying the genetics of celiac and gluten sensitivity, so it’s not valid. Plus, he has never let his work be peer-reviewed or studied and it is not published in Pub Med.

          And even if someone has a gene for celiac disease, it does not mean they will develop celiac.

          “up to one third of the U.S. population has the genes for celiac disease, but it is thought that only 1-4% of them will
          actually develop the disease at some point in their lifetimes. This means that people with DQ2 or DQ8 can develop celiac
          disease, but the vast majority of them aren’t destined to develop it”

          Genetic testing is not a diagnostic test for celiac or NCGS..
          Sorry, but that is the stone cold truth.

          Reply
          1. 22.1.2.1.1

            maggie

            I had the HLA class of genes tested through enterolab (Kenneth Fine’s lab).

            I had the gene tests because I had a blistery rash (dermatitis herpetiformis) on and off for over 25 years. I linked it to wheat a couple of years ago. But had been told I have microscopic colitis just prior to that.

            My blood tests came back negative late last year because I had not been eating wheat for the better part of two years and was not willing to do a wheat challenge for an endoscopy test.

            DID you read this first portion of your referenced article? What is genetic testing and who can
            benefit from it?
            There is a blood test available to determine
            whether or not an at-risk individual carries
            the genes responsible for the development
            of celiac disease. These genes are located
            on the HLA-class II complex and are called
            DQ2 and DQ8. Each case of celiac disease
            has been found to show these so-called
            “haplotypes”; therefore, a negative gene
            test indicates that celiac disease cannot
            develop in that individual.
            There are two main reasons for using
            the genetic test when evaluating an
            individual for celiac disease. The first case
            is to “rule out” celiac disease, which is a
            medical term that indicates an individual
            does not possess a necessary risk factor
            for the development of celiac disease,
            genetic predisposition. Without this factor,
            it is impossible that the individual with
            a negative gene test will develop celiac
            disease in the future. People who test
            negative for the gene would
            not
            be required
            to have regular antibody screening for the
            remainder of their lives. For example, the
            children of an adult with celiac disease
            could have the gene test. The results would
            allow the parent to know which children
            need close monitoring.
            In individuals with symptoms who
            have not had a biopsy to diagnose celiac
            disease, but have been on the gluten-free
            diet for a significant period of time, the
            gene test is often the only way to determine
            if symptoms could possibly be related to
            celiac disease. For a person who faces
            this situation, a negative gene test would
            indicate that symptoms are not the a result
            of celiac disease. A positive gene test,
            however,
            does not diagnose
            the disease but
            increases the likelihood that it is present.

            Reply
            1. IrishHeart

              Yes! I am very familiar with all the info about genetic testing.

              But, just to be clear…. if you have a diagnosis of DH, you have celiac disease. That’s a given.

              I am trying to make sure people understand there are NO tests for NCGS…not even gene tests.

              Reply
              1. maggie

                So it doesn’t pertain to me (since I have DH and the celiac gene), but what is the meaning of my gene tests showing receiving a gluten-sensitivity gene from both my parents?

                Reply
                1. IrishHeart

                  I am not aware of “gluten sensitivity genes” in any published medical literature or in any celiac research information.

                  I know there are 2 genes associated with Celiac Disease… the
                  HLA Q2 and HLA DQ8.

                  I am guessing you must have one of these present?

                  Reply
                  1. maggie

                    HLA-DQB1 Molecular analysis, Allele 1 0302 (This is the gluten-sensitivity/CELIAC gene, per report)

                    HLA-DQB1 Molecular analysis, Allele 2 0603 (This is the gluten-sensitivity gene, per report)

                    Serologic equivalent: HLA-DQ 3,1 (Subtype 8,6)

                    These weren’t blood tests, but cell swab tests.

                    Reply
  23. 23

    Gayle Wagler

    After reading the other comments, I add myself to the list of brains affected by celiac. I had no idea this could be the culprit! My husband teases me about committing me, because of my sudden problems of “brain fog”, missing words, memory, and bizarre actions (such as putting the fresh cut strawberries up in the cupboards to be found by my husband.) This has effected my self esteem tremendously. I love this blog because we can help each other improve our lives. Since learning more about this disease I have become more diligent about keeping all gluten out of my diet. Education & self improvement are the Key. Sarah, I wish you the very best in your journey against the grain!!

    Reply
  24. 24

    Megan

    Thank you so much for sharing. I too have felt this way. I don’t have much to offer as far as help, but it’s nice to know I’m not alone.

    Reply
  25. 25

    Jennifer

    Ok, I didn’t read all the previos comments (holy moly that’s a lot of comments) but my initial reaction to the email from start to finish was Iron. If you are Iron deficient, even a litte, that will effect your absorption of all other vitamins and minerals. Two, increase your fiber (like in excess like 40mg a day) because like me and probably most other celiacs things just don’t move through you in a normal fashion. Fiber is a great way to keep things moving at the pace they need to. And not so hard to get gluten free as you would think. 1 cup of strawberries is 4g of fiber!
    As far as neurological symptoms you have to remind yourself you have a disease! Being gluten free does not cure it, merely slows it down in a sense. You still have to stay on top of your whole health!
    Good luck!

    Reply
    1. 25.1

      Gloria @ glutenfreepoodlehome

      Unfortunately eating a very high fiber diet can block absorption of nutrients.

      Reply
  26. 26

    Lindsey

    i remember right before i was diagnosed i was obsessively looking up if you could have Alzheimer’s in your 20’s because i was SO sure that i had it (might be good to note that i am also a bit of a hypochondriac). i would forget things seconds after thinking them. i remember being told to grab something from the next room and i got up and immediately forgot what i was doing. this would happen ALL the time. i used to be scary good at remembering peoples names, and now I’m awful at it to the point where it is embarrassing. i started a new job and this girl introduced herself to me a million times, but no matter what i would call her “Maddie” instead of “Mandy.” it’s gotten better after going gluten free, but I still don’t have the memory i used to have and I’m only 24. whenever i accidentally ingest gluten it’s amazing how quickly my brain goes in the gutter.

    Reply
  27. 27

    Brenda

    I used to feel just like Sarah. Now I am on the AIP (autoimmune protocol) diet and my body is healing. It’s good to know I’m not alone in my experiences.

    Reply
  28. 28

    Katrin Reichelt

    In 2010, after a very stressful and busy time, I went on a trip to my daughter (who gas celiac) and upon arrival my brain shut down. I literally couldn’t open my eyes except for 1 or 2 hours a day. I lost my memory, felt like close to a coma. Upon return, I could hardly leave the house without getting nausea, vertigo and a feeling as if I would faint within the next few seconds. A few days later, I couldn’t remeber why I went out in the first place. Then I couldn’t remember where my home was (it was 150 meters away). I can’t tell how I felt, standing in the street that I knew since 30 years and not knowing where to turn to. I saw a cardioöogust. She sent me to an MRI for my brain. It showed plenty of little damages, like mini strokes. My house doctor, in opposition to the very concerned radiologist, said it was nothing. She had already decided that I was mentally insane, oversensitive, a coocoo middle aged kady and she hadn’t scrolled down enough on her computer to discover the strong vit d deficieny… I discovered it myself and started supplements. A few days later, my brain got MUCH better. Then I decided on proper investgstion and what came out at the age of over 50 was NCGS, plus plenty of other food intolerances. The according diet changed my life. A lot of what you describe I experience, too. Somehow my body responds to GMOs worse than to anything else, and they sre so hard to avoid. I am deeply convinced that gf without gmo-free is waste of time. In case you haven’t tried that, on top of your gf diet, would be my recommendation: gf, vit d, gmo free and testing if other food intolerances. All the best to you! Katrin

    Reply
  29. 29

    Ande

    I have the same symptoms- If I accidentally eat gluten, sometimes I can’t put full sentences together. It’s like an out of body experience. It happened at a restaurant once and the waiter thought I was on drugs… jerk. Anyways, the only solution I have found so far is to just not eat gluten. I use to have seizures, but going gluten free has stopped all of that. If you find a great solution I would love to hear it :)

    Reply
  30. 30

    Raindrop

    I didn’t take the time to read the rest of the comments, but hopefully your getting some good support and learning that you are definitely not alone in your struggles. I myself have similar issues and have two children, one that is a Celiac (son). My biggest success has come to healing the gut. Bone broth and staying away from other potentially inflammatory foods;rice, beans grains, dairy, soy etc. The GAPS diet is the first actual diet out of 6+ that is actually healing both me and my kids. Also herbs, that heal; aloe, L-glutamine (is supposed to help grow celia in the gut lining), probiotics, and Kefir. Prior to this I was losing hope after trying diet after diet. For the first time my son is starting to put on weight and retain nutrients even his skin color is better.
    In the end…..it’s been worth it. Losing all the delicious food that comes along with rice, grains, dairy etc for my life back. Totally worth it!!!

    Reply
  31. 31

    Lisa

    Don’t feel alone. I’m 46 and was diagnosed with celiac at 45. I had depression, no energy, lethargic and, yes, brain fog. It was if I was outside my body looking down at myself. Very fuzzy. I even had a doctor put me on anxiety medication. It took several months of being GF for my B12 to level out. (I took sublingual B12 supplements until this past March). I, too, was calcium, magnessium, iron and vitamin D deficient. I no longer take anxiety meds…never needed them in the first place. I do have permanent neuropathy but I can live with that. I’m so sorry you are feeling this way. Just know you are not alone.

    Reply
    1. 31.1

      IrishHeart

      Lisa,
      I was all that too.
      But, perhaps that neuropathy is not permanent. I had 3 neuros in NYC tell my celiac/GI doc during consultations say they did not feel it would reverse in me, but it did.
      It took 2 years. I am not the only celiac I know who had horrid neuropathy and it resolved. Just sayin. Keep the faith.

      Hang in there, IH

      Reply
  32. 32

    Rebecca

    Hi Sarah,

    I know EXACTLY what you’re talking about. I used to have my brain crash and slump into a puddle of tears every day or two even months after going gluten free. I was SEVERELY malnourished and not healing at all despite staying away from gluten like the plague.

    Here’s what I did:
    Cut out ALL grains – no rice, no corn and DEFINITELY NOT OATS (even GF)
    Cut out ALL dairy apart from raw, grass-fed, organic milk, cream, and cheese.
    Cut out all soy – soy is often contaminated with wheat as it’s grown in the same fields and then put in the same trucks, bins, etc.
    Cut out all inflammatory foods – eggs, sugar (besides honey)
    Cut out bananas – they took anything slightly negative and made it hell on my digestive system because it slowed everything down if you know what I mean
    Cut out beans – I’ve heard bad things and I don’t like em anyway, haha.
    Ate nothing processed – if it has more than 5 ingredients, or anything that you don’t use at home to make food yourself, don’t eat it.

    Lots of organic, best quality chicken I could find at a reasonable price. Lots of grass-fed beef.

    Added in TONS of animal fat – organic, no added nitrates or nitrites bacon, and above mentioned raw dairy. This helped my energy levels like crazy and made me and all my housemates very skinny in the process! (they’ve all jumped on the bandwagon after seeing my dramatic turnaround) I eat about 3 slices of bacon a day plus at least one glass of raw milk.

    I can’t even breathe around gluten or my brain starts to shut down, I wear a mask if I’m going to be in a spot with gluten – http://www.amazon.com/VOGMASK-Microfiber-Filtering-Mask-8-bit/dp/B007Q2816A/

    Saw Ronda Nelson at Restoration Health – she is an amazing person! She does consultations over the phone and she literally went through and repaired my digestive system with me through supplements that were ONLY REAL FOOD. Her supplements are far more effective than most because they aren’t a stripped-down version of the vitamin, they’re made of food from a 400-acre organic farm. I literally put all my meetings and supplements with her on credit because I knew I could actually do my jobs again if she could make my brain start working. And I was totally right – I have now turned completely around and gone from hardly being able to work 30 hours a week (my bosses should have fired me) to just completing a 50-hr week today and I’m only feeling a little tired!
    http://www.restorationhealth.net/

    I really hope this helps! I had some awesome people point me in the right direction and wouldn’t be here today if they hadn’t, so I try to help other celiacs whenever I can!

    All the best and hope you heal super-fast,
    -Rebecca

    Reply
    1. 32.1

      Tabitha

      Hi, just reading through the comments. I was about to add have you tried cutting out all grains and high GI carbs, limiting or not eating dairy or what I’ve found works for me is a little goats cheese, yoghurt etc but never cows. Paleo seems to work for most people with neurological conditions. There is some great advise here, although I really wouldn’t agree with red bull that is pure toxic crap and caffeine is an inflammatory drug. I happen to love caffeine but now only have organic beans and not my previous 4 x cups a day! I have a nasty bout of neurological illness and felt like I was literally loosing my mind, as well as energy, normal functioning etc. My mother died from MND (ALS) her mother had multiple sclerosis. There is so much that is known about diet and autoimmune diseases but little in the public domain. This and the change in my life and health is the reason I started my blog. I believe we all have the power to heal or LIVE with illness, through a combination of finding the right diet for our own individual bodies, love for ourselves and others and forgiveness. You sound very courageous and I’m sure you will find the right way for you. With love Tabitha

      Reply
  33. 33

    Rebecca

    Ah, one more thing Sarah, and this was big for me. Ronda suggested a 40/40/20 diet for me and I believe it’s a good standard for most people – 40% animal protein, 40% carb (ONLY from organic veggies and fruit), 20% animal fat.

    Reply
  34. 34

    Paula

    Sarah, identical story as yours! I’m so sorry ):
    Perfect health now though. It took two years. No neuro stuff anymore!!
    This is what we did:
    Liquid Sublingual B12 and D daily for life!! Adjust amount and get checked monthly until you figure out what you need. The shots don’t give me what I need daily. Liquid Magnesium & calcium …
    No corn, soy, dairy, no sugar, no chocolate, no shellfish, no msg, no carrageenan!
    eat a super high protein diet!! Peel all potatoes… Don’t eat skins. Russets are best. Drink naked Mango Juice. Tossed all old cooking items in kitchen, bought all new. Entire household must be gluten free, no exceptions. You are too sensitive to be exposed.
    Protein regrows tissue. 100% paleo no eggs.
    Rice.. Lungren… Bread… Canyon Bakehouse… Pasta… Jovial or namaste
    Food only from 100% dedicated facilities. Eat 6 or more times daily. Make sure no gluten is sneaking in through soap, shampoo, toothpaste, drugs etc.
    cut off stickers on food , don’t zest citrus where a sticker was. Google the words “salicylate oxylate chart” print and study. Felt 100% better when all were low!!! You will heal! Keep your faith! I hope you have help! It took 3 of us to make health happen!!

    Reply
  35. 35

    Mary

    I take sublingual B12, but not cyanocobalamin. Methylcobalamin form of B12 is more easily absorbed. My naturopath recommended this. Also, they make a sublingual D that finally brought my Vitamin D levels back up (it’s called Bio-D-Mulsion). Lastly, I started using magnesium gel for the terrible muscle cramps in my legs and feet and that helps (you rub it right into your skin so bypass digestion). Also take a magnesium supplement but start off with low dosage. You might also have allergies to other foods, like everyone else is mentioning above. I had to eliminate all grain, dairy, soy and corn. I had most success on the paleo fodmap diet, but everybody is different. I had to do an elimination diet to figure this out.. painful but necessary. Don’t eat anything from a box and if you do, make sure it’s certified GF. I also don’t eat out anymore unless it’s dedicated GF or I really, really, really trust the place. Too many people jumping on the ‘trendy GF wagon’ these days to trust that restaurants truly understand what GF really is. Oh and L-glutamine is great for repairing the intestines. Designs for Health – GI Revive is really good stuff. I hope this helps :) I feel your pain :(

    Reply
    1. 35.1

      Lisa Mims

      Finding out your food allergies is really important. Food allergies not only do bad things to your digestion if you’re sensitive or allergic, they’ll make you incredibly tired and fuzzy. Because celiac obscures so many other health issues, you may be having other serious problems caused by food, that you’re just now seeing.

      Don’t give up yet. I’d bet you can be healthier than you might realize. It just takes time to figure it out–and I wouldn’t just rely on testing. Keep a food diary, and give major changes a month or two to take effect.

      In my case, I had to stop eating red meat and pork, and it took a month for the exhaustion and digestive issues I had from eating red meat to clear. (I’m pretty certain that I just have a tick-bite caused allergy, because I used to run in wildlife areas where I would get bites, and I’m the only one of my siblings that can’t eat meat.)

      Reply
  36. 36

    Kim Maitland

    Wow I can’t believe how similar Celiac and Lyme disease are. Have you 100% also ruled out Lyme disease or one of the many co-infectors ticks carry?

    Reply
  37. 37

    Galwayfan

    That looks like it’s in the area of the cerebellum. The cerebellum moves your body. I know because my son had(s) a large sub arachnoid cyst On the right side that extends all the way to the middle of the cerebellum. He had it shunted in 2001. It took 3 surgeries to get it even somewhat repaired. He has a tremor in his left hand. Poor kid is left handed. His neurosurgeon said it was a miracle he could still walk, talk and see. My son is very tired and his body aches. The neurosurgeon believes my son’s brain rewired itself from video games. Lol! I guess video gaming has its place. The surgeon said he believes my son suffered a sub arachnoid stroke while he was at the gym.

    Reply
  38. 38

    Lisa

    Hi there,

    I didn’t read through every comment, so I don’t know if someone else brought this up, but I wondered if you have exposure to mold in your home or workplace? I have severe reactions to exposure that can include many of the neuro responses you’ve mentioned- brain fog, tremors, chronic fatigue, difficulty absorbing nutrients, as well as tendinitis, depression, etc. It got bad enough that I had to quit a graduate school program due to the severity of mold and water damage in the building where my classes were. I also have a gluten sensitivity, which is what brought me to this page, but I have only had gastro and migraine responses to accidental gluten ingestion. If you are interested in more information about mold toxicity, I’d love to pass along what information I have. My mother has the same issues I do, and she has done tons of research on the subject. Hope this can help, and that things get better for you soon!

    Reply
  39. 39

    cia_marie

    After 2.5 years GF I have recently discovered that I don’t handle oxalates very well, after I’d been eating some high or very high ox foods such as almond flour, chocolate and spinach.

    It turns out that many with kidney stones are suggested to go on a low oxalate diet, and that about 3/4 of kidney stones are made up of calcium oxalate. If the bright spots on the brain scan are calcium, it might be caused by something similar? I’d suspect so especially if you have been eating a good amount of high ox foods, which includes the above as well as most other nuts (peanuts, macadamia nuts) as well as rhubarb and chia seeds and some other items I don’t recall at the moment. I think it’s something you and others may want to look at, as well.

    Reply
  40. 40

    John

    Okay, so I haven’t read through this entire lengthy set of comments except to quickly search for anything related to this point I’m about to make, to ensure I’m not simply repeating older comments (didn’t find anything). But…

    The livescience article that GD linked in the OP says that “[i]t is unclear how exactly celiac disease leads to calcification in the brain, but it is suggested that a lowered ability to absorb IRON may have a role, the researchers said.” It also stated that the patient was “told to … take IRON SUPPLEMENTS…” [emph mine throughout –J]

    But here’s the original article in the New England Journal of Medicine on which the livescience story is based:

    Occipital Calcification and Celiac Disease:
    http://www.nejm.org/doi/full/10.1056/NEJMicm1311406

    They don’t mention ANYTHING about iron. It’s all about folate and folic acid:

    “Treatment with a gluten-free diet, FOLIC ACID SUPPLEMENTATION, and carbamazepine was initiated, and the patient’s condition improved, with remission of all symptoms. … FOLATE MALABSORPTION is a suggested mechanism, because cerebral calcification can be seen in other conditions related to FOLATE DEFICIENCY…” [emph mine throughout –J]

    I hope this doesn’t come off like I’m being dismissive of anyone with iron-related celiac concerns. Heck, my own DX was due *entirely* to anemia symptoms. It just kind of bothered me to see the popular media not getting their facts straight on this (go figure, huh?). I don’t see where all this iron talk is coming from.

    Reply
  41. 41

    Sarah (the writer of the long email). :-)

    Apologies for the delay in response, I have been working hard trying to pick up the pieces of my academic career/finals week. Though because right now my absorption is so messed up, I can’t predict anything outside of my regular classes well enough to schedule appointments with my professors (I actually have tried meeting with them while” crashing” (my term for it anyways). It is a mistake that one only makes a few times). So probably, I will not be able to continue here, though I plan on working with my Doctor to make an appeal.

    An interesting update, my Doctor who has her MD plus naturopathy and a boatload of awards, qualifications, and reknown, thinks several things.

    1) That my problem is increased permeability, and that after eliminating any possibility of other food sensitivities we can easily treat and correct the nutritional/neurological issues due to the permeability.

    2) That because 90 percent of your body’s serotonin (apparently, according to really cool research I think she said was coming out of Columbia university?, is in your GI tract, and when that is messed up by anything, your Serotonin balance is thrown off, effecting everything, but also your Dopamine balance.

    3) In other words, my lifelong ADD she thinks, is not actually ADD. But secondary to the permeability issues.

    I just wanted to give an update, and thank everyone for their comments. There were so many great ones, and so many good food/nutrition/shake ideas that really did help!

    Sarah

    Kudos to the poster with the keen eye for the irony of the math jokes! Since I’m just coming off a crash (headache and all to prove it) I sat here staring at 9 + 14 for much longer than I’d care to admit. :-)

    (and apparently got redirected back here because I forgot to answer the security question I just wrote about).

    Reply
  42. 42

    Lindsay

    Sarah! I also had crippling neurological and psychological symptoms. Please, please look into amino acid therapy. I’m celiac, had enormous memory problems, as well as totally crippling depression and panic attacks — I found a wonderful functional psychiatrist in NYC who pretty much saved my life, but she put me on amino acid therapy. Did an amazing range of blood tests and evened out everything with my Vitamin B levels. You might have an MTHFR mutation, and if so you need a special kind of Vitamin B. Obviously, I’m not a doc myself, but its been a year later and I have never felt better in my life. Clearer than I’ve ever been. Hope it finds you well and it helps! Best of luck!!

    Reply
  43. 43

    Lenore

    I think I am too late to the party as I see this post is several years old. You must be off all b12 supplements for four months to get an accurate diagnosis, for a b12 deficiency.That means no b vitamins in a multivitamin and no energy drinks. You must also be evaluated for pernicious anemia. It is an autoimmune disorder and since celiac disease is also an autoimmune disorder , you can be succeptable this type of disease. Although, you said you haven’t been diagnosed with celiac disease. I would further suggest removing all grains from your diet to enable your body to absorb the vitamins in your diet. I have non-gluten ataxia, it’s frightening and took me over four years for a diagnosis.

    Reply

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